When I met Bette MacAloney five years ago, she was pale and thin, very frail-looking. I was told she had cirrhosis of the liver and assumed she was an alcoholic.
This is what I know now: Bette does not drink but she did have cirrhosis and she was very sick. When we met, she was just completing treatment for hepatitis C, which she contracted at the age of 22 through a blood transfusion given to her after the birth of her second child in 1974.
Sitting in the cozy living room of their log home in Mount Pleasant, I ask Bette and Alton, her husband of 42 years, why they are talking about this now.
“Because there’s such a stigma that goes with hepatitis C,” Bette answers. “The whole stigma is because of ignorance. People don’t know and they don’t want to know.”
“Maybe her story can help someone,” Alton says. “Worldwide, one in twelve has it and doesn’t even know it.”
Hepatitis C is transmitted through blood so that means anyone who gets a tattoo, shares needles or has unprotected sex could be at risk (receiving hep C through a blood transfusion is no longer an issue).
“It can kill you,” Alton says. “Untreated, you will develop cirrhosis of the liver.”
After 37 years and one long, hard battle to save her life, Bette decided it was time to speak out in the lead-up to World Hepatitis Day on July 28. She hands me a bookmark. On one side is a photo of a heavily tattooed arm and on the other side, a few facts about hepatitis C: It is a serious liver disease that can kill; 5,000 Nova Scotians are living with hepatitis C; it is 10 times more common than HIV in Atlantic Canada; it can be prevented but there is no vaccine.
Back in 1974, three months after the transfusion, Bette could see something was wrong with her.
“I had yellow eyes, I had yellow skin, very dark coloured urine. I was very, very tired.”
Recognizing the symptoms, her doctor admitted her to the hospital.
“Back then, it was either serum hepatitis or infectious hepatitis,” Bette explains. “That’s all they knew about it. A nurse told me I’d contracted it from the blood. They told me I would be sick, tired, not feeling well, no energy for at least a year. And there I was with a new baby.”
The doctor assured her she would get over it and sure enough, a year later, Bette started to feel better. There were no letters for hepatitis then, no A, B or C. It wasn’t until 1998 that Bette learned which hepatitis she had.
“Then it’s like you’re labelled,” she says.
She didn’t feel like anything was wrong and her doctor didn’t recommend any treatment but six years later, she had a new doctor who learned she had low platelets and bruised easily. A specialist discovered her enlarged spleen, ordered a biopsy of her liver and the next thing she knew, she was diagnosed with cirrhosis of the liver.
Without treatment, the hepatitis C in Bette’s system had not gone away; it had retreated to her liver, symptomlessly attacking it for more than three decades.
Without treatment, Bette had five to eight years to live.
“By the time we detected it, she was in early stage four of cirrhosis,” Alton says. “After all those years of flying free as a bird.”
The treatment was brutal. Bette’s condition was so advanced, she needed the heaviest dose she could stand. It lasted 18 months but Alton calls it 72 weeks because Bette had to have a needle a week and Alton gave her 71 needles after the nurse showed him how with the first one. The pre-loaded syringes cost $2,500 for a month’s supply but luckily, Alton’s health plan covered them. Bette also took six pills a day plus two sleeping pills.
The effects on her, both physical and emotional, were wicked. She was flattened and strungout.
“I felt sickly all the time,” she remembers. “I was cold all the time. I couldn’t stand motion; I couldn’t watch TV. I couldn’t even read. I continued to go downhill from day one. I was alone a lot because Alton had to work. We talked every hour and I rested a lot. Every little thing stressed me.”
Bette’s friend Debbie was not deterred by the impact of the treatment. She stepped up her visits, coming every other day, even in a snowstorm.
“I felt much better just having her company,” Bette says. “I named Debbie as my angel.”
According to Alton, they didn’t tell anyone that Bette’s treatment was for hepatitis C.
“We said it was cirrhosis,” he says. “It wasn’t a lie. Would you sooner tell people you are an alcoholic or that you have hep C?”
Except...it’s not contagious. We can drink out of the same cup, we can shake hands, she could even sneeze on me. Infection is only blood to blood. Alton has been tested and he is clear, concerned not for his health but his wife’s. Bette continues to test negative five years after treatment.
There were some really bad times – Alton says they could fight viciously over nothing – but that’s made them stronger, closer and more appreciative of their time together. Even though it took her another two years to recover from the treatment (which created other problems in her body), they’ve been to Disney World four times.
“There were times when I wanted to walk off the face of the planet but I would go through it again if I had to,” says Bette. “What else are you going to do? We’re not quitters. I want to be here.”